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Factors Influencing Participation in Precision Health Research Among Diverse Individuals in South Carolina
Bernardica L Brown1, Paula S Ramos2,3, Lori Ann Ueberroth2
1Department of Public Health Sciences, Medical University of South Carolina, Charleston, SC, USA.
Background:
Precision health research uses genomic, environmental, and lifestyle data to tailor disease prevention, health promotion, and treatment strategies. While it offers potential for improved diagnoses and personalized care, recruitment and retention remain challenging.
Methods:
The Precision rEsearCh pArticipatioN (PECAN) study used an exploratory qualitative design, guided by the socioecological model, to examine barriers and facilitators to participation in precision health research among diverse South Carolina residents. Ten focus groups were conducted with 23 participants, exploring individual, interpersonal, and community-level influences.
Results:
Barriers included mistrust in the medical system, limited awareness of research opportunities, and logistical issues such as transportation and scheduling. Facilitators included perceived health benefits, monetary incentives, ease of participation, and strong communication with the research team. Recommendations to address barriers included inclusive outreach, transparent communication about data use and participant expectations, leveraging provider relationships, and offering flexible scheduling and locations.
Conclusion:
The PECAN study highlights how mistrust, logistical barriers, and historical inequities-such as medical exploitation and limited rural research infrastructure-impede participation in precision health research. Facilitators like health benefits and effective communication can support engagement. Despite a small sample size, findings underscore the need for systemic change, including policy-level solutions to expand rural research infrastructure, enhance provider engagement, and ensure transparent data practices. These insights from rural and diverse communities emphasize the urgency of structural changes to promote equitable participation in precision health research.
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